Wednesday, September 29, 2010

Time for a Facelift! And a good ol Chloe update.

Okay, so I finally figured out how to change up my blog. Rebecca had done a beautiful job on it. It was just time for a change. Besides, the picture of Chloe was awfully outdated. So I changed things around including the picture, but couldn't figure out how to put the picture in the title line without it being HUGE! If anyone knows how to fix it, let me know. I also need a new button, if anyone knows how to make them and could let me know, that would be great!

Chloe's little stoma nub is healing up. It's red either because it has a little leakage (and I mean a LITTLE) or because she plays with it. I can't tell if it's bothering her or just something new to fiddle with.

Chloe's also been having loose stools and diarrhea and it turns out her formula has been recalled because it has "bug particles" in it. Can you say NASTY????? They SAY it's not enough to be a health hazard, but could cause some digestive upset and cause the child not to want to eat. Soooo, what do ya think????? We're certainly not giving her anymore! And I'm calling the pedi tomorrow!

The pedi appointment went fine on Monday. She was of course full of zest and looked great, so the doc just had to trust me. I put in a call to her endocrinologist to see if it's possible that her thyroid is causing the fatigue, even though she's supposed to be regulated. I'm wondering if it could be the generic she's on. My endo doesn't like me taking a generic because they can vary so much. But still no word from her endocrine. Hopefully I'll hear back tomorrow. I also want to know when her next blood draw is due because our pedi wants her annual cbc done. I want it done too. He doesn't think it's her heart, because she's not showing other symptoms, like sweating. It could be sleep apnea, but I think we'll hold off on a sleep study to get lab results first. If in a few weeks it's still going on then we'll probably pursue a sleep study.

I started letting my imagination get the worst of me today and really started to worry about the what-ifs. And with all the Ds kids out there fighting leukemia, I just couldn't get it out of my mind. I know I'm being paranoid and over-reacting and I never try to think about the what-if's but rather focus just on what we know now. I guess it all just got away from me today. All my worry just came crashing down around me. But don't worry, a nice warm shower, a tea party with my 5-year-old and some good ol' girlie nail painting brought me back to the here and now. I'm feeling better now.

Tuesday, September 28, 2010

Time for some More Pics!

Sadie taking care of Chloe when she was sick.

Xander at our town Duck Race fundraiser (sitting in the ambulance).

Sitting on the ladder truck.

The kids - I know, Chloe looks miserable. . . she wasn't.

Chloe - sittin' pretty.

Monday, September 27, 2010

GREAT NEWS and Gut Feelings

We'll start with the GREAT NEWS (or potentially great news anyway). Chloe's g-tube site seemed to leak MORE after being cauterized last monday so I put in a call to surgery and we were scheduled for a pre-op appointment today. Well, yesterday and today it seems as if it actually closed up. There has been very little to no leaking. So they canceled our appointment and we get to watch it for a few days. My gut says this is it, that it's going to close and there will be no surgery. That's all good (make it GREAT) news.

Now for my other "gut feeling". Chloe just doesn't seem right. She's been tired for about 2-3 weeks now. Granted, she's had a cold for the last week, so she's been visibly TIRED and cranky, but before that even, she just hasn't seemed like her full energetic self. Now maybe I'm just being paranoid. Maybe it's just a growth spurt or something. But I can't help worrying that something else bigger is going on. Something that's wearing her down. We go in for a quick 15 minute appointment today with the doc. Hopefully he'll have some ideas. I want to get to the bottom of this. It's nothing startling, just this subtle sense that she's tiring out more then usual (and it's not in my imagination because her therapists and friends have commented on it as well). I'm sure we'll cover the gammat of possibilities - sleep disorder, thyroid, heart. . . not sure what else. I'll keep ya posted. . .

Friday, September 24, 2010

I May Have Spoke too Soon

Chloe's g-tube leaked a bunch yesterday so I MAY have spoken too soon about her not needing a surgery to close it. We knew there was a slim chance, but we were hopeful. Then yesterday when I went to change her diaper her bandage was SOAKED. Of course the surgeon is out of town and the nurse doesn't work in the office on Fridays so I have to wait until Monday to find out for sure what the plan is. Whatever the deal is we'll just go with the flow. Obviously we don't want surgery, but the good news is they can take care of the extra skin that grew around the site if she does need it to be closed. Either way, we know she'll be good. :)

Her cold seems better today. No fever. But she's having some diarrhea and not really eating (OF COURSE, because her g-tube is gone!!!!) But she's happy and playing and you'd never know by looking at her that she had a bug. Still feeling thankful today. . .

UPDATE: Spoke to on-call surgeon. We are scheduled for a pre-op appointment with Chloe's surgeon for Monday. Will keep you posted. . .

Thursday, September 23, 2010

Thankful for the common cold????

You bet I am! As I've been online today reading about Chloe's little friends in cyber-world who are fighting for their lives against leukemia I indeed find myself grateful that Chloe can and will manage her cold. 101.6 today and snuggling with me on the couch actually reminds me of how lucky we are that Chloe can now have an everyday cold and NOT have to worry about fighting for her life. My heart is heavy today thinking of my dear friends out there who are not so lucky. Sweet Ella and Lois I will be sending extra positive energy your way today and the many days to come. Although we have not met them in person we are bonded by a special little extra chromosome and for that I am also thankful. Say a prayer for their families and maybe a little extra prayer for Chloe.

BTW, just an update. Spoke to the pedi this morning and we're taking her off the Reglan and seeing how she does. Wish us luck! :)

Tuesday, September 21, 2010

Surgery Update

So if you've been following along you know that Chloe's G-tube fell out on Friday causing us to go to the Emergency Department because I didn't know when it fell out and if it's been out too long a surgeon might have to put it back in (a G-tube is a small little tube that goes into Chloe's stomach so that we can put liquid directly into her stomach. This was necessary when Chloe was considered "failure to thrive" and was too weak to eat enough to sustain herself. She's had it for a year and a half). It's fallen out before and I've been able to put it back in, but since I had no idea how long it had been out surgery asked that we come in to have a surgeon look at it. So we loaded up and drove to the hospital and they decided WITHOUT looking at it to leave the g-tube out because she hadn't used it in 2 1/2 months!!! (Don't get me started on THAT whole process, considering a surgeon never came down and even looked at it, meaning we drove in there and have to pay a $150 copay for something they could have decided over the phone! ARGH.) Anyhow, we DID get scheduled to see Chloe's surgeon on Monday (for another $40 co-pay - couldn't they have coordinated that better????) to make a plan for closure of the g-tube site.

Apparently, about 90% of the sites will close on their own within a week. For those that don't close a surgical procedure is required. The GREAT news is that the surgeon is pretty confident that it will close on it's own because it has already closed a significant amount. The only downside is that she has some extra tissue that grew around the site that won't be removed now so Chloe will be left with not only a scar, but a little lump of skin on her belly. I'm sure she'll HATE it when she gets older, but I guess we'll just have to address that with a plastic surgeon if and when she gets older and it becomes and issue (not "if and when" she gets older, but "if and when" it becomes an issue!!! LOL). But obviously the key is that she won't need a surgery! Whooo hoooo!

The other issue that the surgeon briefly addressed with me was the use of Reglan. She really felt that it was a nasty drug and not worth being on anymore since Chloe's not even taking an antacid anymore. We discussed the potential for serious and permanent side-effects. It just sounds to me like it's time to get off that stuff. (She takes it for stomach emptying problems, but I think that she's probably grown out of that. Seems to make sense to me that we at least try her off of it!!!!) I've heard a lot of parents won't even let their kids go on it, so I feel a little guilty for having her on it for so long without knowing more about it, but not much I can do about it now other then get her off of it.

Chloe has seemed a little 'tired' lately. She's not necessarily sleeping more, just seems a little droopy. Her therapists and friends have also recognized this in her. I think it'll be good to eliminate one drug (then she'll just be left with her heart med and her thyroid med) and then we can evaluate what might be causing that.

Finally a little bit of a funny story - when we were in the ED for her g-tube they wanted to make sure everything was "working" okay - in other words, she could drink something without getting sick. So I gave her some juice and before you know it, it was leaking out of her g-tube hole!!! So there I was giving her juice and it was like a cartoon when the character gets shot and then they drink something and the liquid comes out the hole!!!! I know, kinda gross, but you have to admit, at least a little funny! LOL

Saturday, September 18, 2010


Just had to post a picture of Chloe's G-tube - her FINAL G-tube and our parking pass from our trip to the Emergency Department. :)

And now for some more BIG NEWS!!! Chloe took her first step today at our good friends Christina, Doug and Rory's welcome home and 2nd birthday party. It was soooo exciting and I was thrilled to have such special friends to share this momentous occasion with. Too bad daddy wasn't there to see it! And of course too bad I didn't get it on video! She just stood up in the middle of the yard and then took a step. Go Chloe!

Friday, September 17, 2010

Keeping Me on My Toes!

I went to change Chloe this morning and when I lifted up her PJ shirt I found her G-Tube deflated, just lying on her belly (ON, not IN!). Since I didn't know how long it had been out I called Pedi Surgery to see if I needed to come in or not and indeed, they wanted me to make the trek to the emergency department so a surgeon could look at it. Well, after driving all the way there no one from surgery even came to look at it because since she hadn't used it for 2 1/2 months they decided to leave it out!!!! We will see her surgeon on Monday. The plan is to let it close on its own. If it doesn't close after a week, then they will schedule a procedure to close it up. Too bad we couldn't determine that over the phone, but at least it's all good! It's got a bandage on it for the "oozing" of stomach contents which I need to stay on top of and change frequently, but I can handle that. What a big girl! No more g-tube (okay, can I confess I'm a little nervous to have lost the safety net!!! I know, she'll do great, and she's ready, but there was something comforting about keeping it in for 6 months after she stopped using it - that was the original plan). I guess when Chloe decides she's ready, that's it!

Below is a pic of her sitting in her stroller in the ED. The resident that treated her was an intern when Chloe was first admitted 2 years ago. She was THRILLED to see Chloe doing so well. :)

Thursday, September 16, 2010

Say What?

Well, Chloe had a hearing test today. It was a follow-up to a test she had several months back that showed she had some mild hearing loss likely related to fluid. The repeat test today was scheduled so that it would be during the time of year least likely to have fluid. She has been free of colds and runny noses and hasn't shown signs of any ear infections, however she did still test with a mild loss. We are scheduled for an ENT appointment the first week in October (the appointments were originally scheduled back-to-back at the same place so we could get immediate feedback, but they lost an audiologist and had to move our appointments around, so now we have to wait. Shucks.) So the big question is whether or not they'll recommend tubes. I wasn't surprised because of the previous test, but it's been a busy few weeks. Her eye is turning in, her foot is turning in and now hearing loss. All pretty minor, but things we need to address. Let's hope this is the worst of it. We can deal with this stuff!

And for some good news, Sadie had a hearing test Tuesday and passed with flying colors. YAY Sadie!

Thursday, September 9, 2010

PT progression

Chloe's been doing great with her PT lately. I've been very impressed with her standing (she stands up in the middle of the room for about 10 seconds) and walking with a push toy or holding hands. She's also been playing in squatting and practicing the exercises the PT gives her by setting up a stool all by herself and going from sitting to standing up against a wall and back to sitting again over and over. I couldn't wait to get her to PT today to show off her skills, knowing full well she probably wouldn't perform. I was pleasantly surprised however that she did MOST of her new budding skills for her PT. She was pleased! :)

Unfortunately her great work was a little over-shadowed by what we both noticed was a signficiant turning in of her left foot! Argh. First her right eye and now her left leg? She's going to be going in circles! LOL (okay, maybe that was inappropriate). We're going to watch it carefully over the next few weeks. PT thinks it's most likely muscle weakness as opposed to bone (good news), but she'll make a referral if she has any question. Chloe's never seen an orthopedist so now may just be the time.

On a side note, I think I get the dumb mother of the year award. Oh how I wish we had this on video! I managed to smash my chin on a table as I was diving into a my hiding place while playing hide-n-seek with my 5 year old, biting both insides of my cheeks and tongue, and jamming my whole jaw up into my head and ears. OUCH! I'm super sore, but okay! Thank goodness!

Tuesday, September 7, 2010

Labor Day Weekend and Eye Doc

Well, before I give the weekend review in pictures I just thought I'd update Chloe's eye appointment. There was good news and bad news. Okay, not even "bad news", but something we have to watch. The good news is she doesn't need glasses! YAY! Her eye sight is great. Right on. The problem is one of her eyes turns in. It doesn't do it on it's own, just when the doc tests her. We have to watch it and return in 4 months. Because it's present at 2 years of age and because she does NOT have nearsightedness, it is not something that would be treated with glasses, but rather surgery. It's supposedly an easy procedure that the kids quite well with (notice he said "the kids" - LOL - said nothing about the parents!) So my guess is she'll need surgery for it eventually, it's just when. But she's amazed us before so I'll worry about it when the time comes.

Chloe managed to get herself wedged in between the couch and table while the rest of us were watching Camp Rock 2. Earlier that evening Sadie called out to me "MOM! Chloe's sitting in the dryer!" Sadie had opened the laundry room door and Chloe had crawled in the front loader, turned herself around and was sitting in there druming away with chopsticks. It would have made quite a picture if I hadn't been so horrified that she was sitting in the dryer!!!!!!!!!!!!

Sadie sharing some Italian Ice with Chloe at the Taste of the Shoreline in Guilford.

Sadie and Xander all alone in the bounce house.

Chloe watches the action with Nana.

Bouncing together.

Chloe at the beach.

Mommy and Chloe enjoying a beautiful afternoon at the beach.

It was a wonderful weekend.

Monday, September 6, 2010

Do's and Don'ts When going to an Air Show

DO get a babysitter for the baby/toddler! 8 hours in the hot sun and LOUD airplanes is not a great fit for a baby/toddler!
DON'T forget to administer the meds that you so carefully packed!
DO bring your own water as the tens of thousands of people make for LONG lines and eventually they WILL run out of water!
DON'T follow the traffic thinking they know where they're going! Stop and Ask!
DO bring sound-canceling headphones for your sensory-sensitive 9-year-old and 5-year-old.
DO bring and extra SD card for the 100's of pictures your husband and son will take!
DON'T forget to bring lots of sunscreen!
DO realize that 8 hours in the beating sun is long for anyone!!!
BUT DO go because it will be one of those days that you and your children will remember forever!!! TRULY AMAZING!!!!
We saw the Blue Angels and a whole days worth of amazing acts! It was truly a once in a life time adventure. It was well worth the 3 hours drive and long day.

Saturday, September 4, 2010


Xander and Sadie ready for school. Xander goes full day to 4th grade and Sadie is in afternoon Kindergarten so she was just posing with Xander. ;)

Xander on the bus! He was a walker in our old town.

Sadie ready for Kindergarten and her first ride on the bus!!!! Mommy was VERY nervous! She was all smiles as she got on the bus and headed off to school. (Mommy was a wreck!)

Chloe waiting for her brother and sister to get home!

Home at last! Mommy and Chloe were soooo happy to see them!!!!
Well, the first day went off without a hitch (other then a late bus, but that's to be expected). Hope you enjoyed the pics!!!

Wednesday, September 1, 2010

Big Day Tomorrow

So tomorrow is the start of school for my 2 "big" kids. LOL. Who'd of ever thought I'd think of a Kindergartner as a "big" kid. But Sadie is and tomorrow she'll head off on her own on the bus to her new school. She is in afternoon Kindergarten so even though Xander is going to the same school (new to him since we just moved) he'll go on the bus in the morning and I'll have to put her on by herself in the afternoon. I've been having great anxiety about my little sunshine that often cried and/or screamed when it was time to go to Preschool. The thought of that taking place out on the street corner has been daunting. But alas, I have had an inner dialog with myself to convince myself that either a) that won't actually happen or b) if it does, it's not the end of the world and we'll all survive. So with that being said, I'm ready for tomorrow to come. To put my smiling, waving 5-year-old on the bus and bid her farewell (well, for 3 hours anyway) OR put her on the bus kicking and screaming with a smile and wave on MY face to reassure her that it will all be okay. Happy first days to all of those out there embarking on this new adventure. I feel your pain/joy. :) Cheers.